Debbie's ME/CFS Page
Update - March 2005

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It is almost four years since I decided to create this website, and Life can feel like walking uphill sometimes!  NY sculpturealthough my intenti  on was to write regular updates that hasn't happened (as you can see!).  My only previous update became more of a diary than I ever intended this site to be.  I hope that having left a longer gap, this update will be more in keeping with my original idea, which was to write about my experiences of living with ME, and to hopefully help others in similar situations.  Over these last few years I have heard from many people who have been pleased to read my positive slant on coping with ill health, which has been very gratifying.  If it has helped just one person, besides myself, then this will definitely have been a worthwhile project.

As I wrote in my original  introduction, I still believe that the best route to recovery is to remain positive and to look forward, coping with each day with realism but never relinquishing hope that things will improve.  That hasn't been easy to maintain, in fact, I've experienced some depression and much frustration over the last couple of years. I'm back to 'normal' again now, and I know exactly why.  March always looks better than November (at least it does in the northern hemisphere) and I have a few dates filled out in my diary, which was totally blank for too long.  It certainly helps to have something to which I can look forward.  Bach Flower remedies of Gorse and Impatiens are not required at the moment, but have been a big help at low points.

Looking back it has puzzled me why I didn't suffer from depression during the earlier years of this illness.  I think that the goals set by my Open University study kept me going, quite literally.  Ten years of essays to write, exams to sit;  I had a goal and a purpose of a kind, plus the satisfaction of achieving something.  Although I couldn't complete all of the course work some years, I still had those goals, and tried not to regret what couldn't be done.  It is simply not worthwhile recriminating yourself for being unable to do the unachievable!  If I have any advice for those in a similar situation to myself, it is that you must accept your limitations, and don't worry about what can't be done.  We have to cope, and not push ourselves as we did when we were healthy.  If you continue to beat yourself up over the unachievable, your health will suffer.

My health has improved quite considerably in the last few years, which has, ironically, resulted in frustration and depression.  Walking is much easier than it was even two years ago, the myalgia appears less frequently, and when it does appear, subsides quickly, enabling me to walk well and for longer periods.  I rarely experience pain in my feet from standing still anymore, which means I can once again do some menial chores around the house like washing up.  (You see, it's not all good news!)  I still get a lot of headaches and swollen glands, and I need my mid-day nap, finding it impossible to stay awake for more than about eight hours at a stretch.  If I do try to stay awake for too long, fatigue sets in, my ability to concentrate is severely affected, and everything begins to close down.  Napping means I can cope and appear normal most of the time. It doesn't take as long to recover from my nap as it once did, but I still lose my voice afterwards.  Although I have achieved a lot in the last couple of years, I am still not ready to try to return to work.  At present I see no way of going out to work even part time, but I don't feel too far from that point.  It is surely not far in the future for me now.  But that is where the frustration comes in - the wondering - when, what will I do, how long will it be...

I need patience.  Above all else these days, I need patience.


In the meantime, I find it a salutary lesson to look back on some of my better moments to remind myself of how far I have come since ill health struck 16 years ago.  The best way to realise improvements is to revisit places I'd been to when my health was at it's worst.  Last week I went to London for the evening.  Yes, it is a long way to go for the evening, taking over three hours by coach, but I can't afford London hotels at the moment, so it was a day return or nothing, and I can cope with a long day's travelling if I'm sensible.  The long journey on a relatively straight road means I always sleep en route, allowing me to take my essential nap somewhere between stops at Cirencester and Heathrow Airport.  Where I would have needed a taxi to get  from Victoria Coach Station into the West End, I can now take buses, so my improved ability means I can save money!  More money was saved by having a cheap seat in the balcony, rather than the very expensive seats in the stalls.  I did experience myalgia in my thighs, climbing to the balcony level, but I gave myself plenty of time to rest and was able to sit down a couple of times on the way up.  I had a lovely evening seeing Michael Ball and Maria Friedman starring in Andrew Lloyd Webber's latest musical, The Woman in White, at the Palace Theatre.

Curtain up and I dashed for the bus - yes, 'dashed', carrying my walking stick - and caught the 24 up to the Victoria Bus Depot.  I could have caught another bus to take me the couple of stops up to the coach station, but it was snowing, and I love walking in the snow, so I chose to walk. The first time I walked that route was the day of the blockades during the fuel crisis four and a half years ago, the day after I saw Michael Ball at the Cafe de Paris (see ME and MB).  I had no choice then, I was frightened and cried all the way.    Now I can walk that far, even though it's uphill, and I can't help but feel rather triumphant as I walk along that road.

Another memorable 'revisit' was a family holiday to the south west tip of Cornwall.  Several years ago we had stayed on a farm called Scilly View (the Scilly Isles viewed in the distance for a short while after rainfall only!).  I was a wheelchair user at the time, and criteria for booking holiday accommodation had to include flat access, close car parking, no stairs.  In the last two years I've only used wheelchairs to help me around large airports (and there have been a few) but as the myalgia is less of a problem, that is no longer a requirement.  September 2003 saw me return to Cornwall, and I climbed my first hill in years.  It was only a small hill, and I rested several times on the way up, but I was determined to get to the top.  A Neolithic settlement and spectacular views, with sea on three sides, tempted me onwards.  I've always had a particular love of the ancient landscape of north west Cornwall.  One of my ambitions is to explore the area in detail, on foot.  In the meantime one small hill would be sufficient.  But I have to say that if at any time I had felt unable to go on, I would have stopped.  For anyone with an illness like ME it is foolhardy to push yourself too much.  We have to listen to our bodies and make sure we stay within our limitations, otherwise our health worsens.  Although I was pushing myself, I was confident that I wasn't pushing too hard.  This hill was just behind Scilly View, and it felt good to sit at the top and look down on the farm.

Walking more easily means I can now get as far as the local shops and the bus stop, all of which gives me so many more options, and a certain degree of much needed independence.  In my local town of Gloucester, I can once again visit some of the roads I've not walked down in many years, and have enjoyed re-visiting small shops inaccessible for so long, rediscovering the Cathedral and the frescoes of St Mary de Crypt.

The cloisters of Gloucester Cathedral

I still prefer not to go out on consecutive days, although it is certainly possible.  I rarely plan to be out on consecutive days, just in case I overdo things and need to rest.  I certainly wouldn't make plans for the day following a visit to London, but it is easy enough to cope with a supermarket trip the day after shopping in town.  Yesterday I went to the supermarket and deliberately left my walking stick at home.  The stick has become something of a mental crutch as I only occasionally use it these days.  Pedestrianisation in the centre of Gloucester means there are plenty of seats I can use to rest on in between the shops, so town shopping has become fairly comfortable.

My biggest adventure for years came in Autumn 2004 when I spent two months in America, visiting friends.  When Linda invited me to stay with her for as long as I could manage, I didn't initially think it could happen.  Firstly, I couldn't afford the air fare and secondly, I wasn't sure how I would physically cope with such a long journey.  But with the knowledge that I could rest as much as necessary once at Linda's, I knew this was a once in a lifetime opportunity for a long extended trip.  My parents paid my air fares, and once other American friends knew I was planning to cross the Atlantic, they extended invitations to me as well.  My lovely friends have been so generous and understanding with me.  We all met online, but have met in person on their trips to the UK.  We'd all been writing to each other for a few years, so they knew what they were taking on by having a vegetarian semi-invalid [that one's for Marilyn] on their hands.  Confident that they knew what to expect with my naps, loss of voice, and walking restrictions, this nine-week excursion promised to be an exciting time, and if I was taking on too much they would understand if I just needed to rest.

The flight from Gatwick to Newark went smoothly.  A porter collected me off the plane and pushed me through Customs, to be greeted by Linda who was as excited and happy as me that I'd arrived.  I had a relaxing couple of weeks at Linda's home in the woods of north New Jersey, and it was wonderful to chat long and late every day.  A day in New York was made possible for me by Josie who put me up in her hotel room, right on Times Square, and the three of us had a memorable visit to see Hugh Jackman in the last performance of The Boy from Oz.  The following day Josie helped me on my way to JFK, to fly across the Continent to Washington State, where I was to spend the next three weeks.  Night had fallen by the time I reached Seattle, and I had great views of the city all lit up.  Marilyn met me at the airport, and so began my West Coast adventure.  Bev joined us for a couple of days on the coast, and though it was cold and raining I couldn't leave Ocean Shores without dipping a toe in the Pacific.

The next day saw us at Mount St Helens.  Unfortunately, we didn't see much of the Mount itself as we were in cloud most of the time.  Evidently I was really close to the crater!  Never mind the weather, the three of us had a great time.  More poor weather affected our trip to Mount Rainier.  A planned picnic in the meadows wasn't to be.  As we climbed higher and higher, the snow began to fall, and we froze, but it was beautiful to see the snow falling on the pine trees.

September Snow at Sunrise - with Bev, photo by Marilyn

Northwards to Fran's at Whidbey Island for a weekend party of Michael Ball fans who gathered from all over the state, plus me from the UK and Bev from Utah.  It was quite a gathering at Fran's lovely home on the Puget Sound.

Tearful goodbyes before Fran, Chance (the best-behaved dog I have ever had the pleasure to meet!) and I were left alone for a peaceful day to rest, then some more exploring, as Fran drove us around the region, showing me the sights.

Pat and Susan joined us for a long weekend's trip into British Columbia, where we spent two nights in Vancouver, and one in Victoria.  Our morning in Stanley Park was particularly memorable.  Fran was able to drive around the Park, stopping at different spots where we took in the views across the harbour, towards the city, and towards the mountains.

Vancouver - a view from Stanley Park

Back to Whidbey, on the ferry, then on to Pat's for the rest of my West Coast visit.  We were able to spend more treasured time with friends, and visited Seattle, the Snoqualmie Falls, and I had my first experience of American sport, with a trip to see the Mariners playing at home.  I surprised myself by actually understanding some of the rules of baseball!  I needed Pat to help me feel brave enough to ascend the Space Needle - I'm not great with heights - and we both had to hang on to each other at the top!  Of course, I had to do the touristy stuff and bought a Seattle T-shirt.  I would have liked a Sleepless in...  one, but they were three times the price for two extra words.

More emotional goodbyes, and I was off to Pittsburgh to join Barbara and Ron at their home in Butler.  Fall was drawing on, and it was wonderful to see the autumnal colours in the trees.  Something that I hadn't previously realised about North America, was the density and extent of the woodland.  When one thinks of 'America' it isn't usually 'nature' that springs to mind.  Barbara treated me to some lovely trips out from Butler:   it was fascinating to see a different style of living in the Amish settlements, and we had an English-style tea in Mars, of all places.  Yes, there is life in Mars!  A Barry Manilow concert in Pittsburgh ended my Pennsylvanian week, and I headed back to New Jersey on the train, for two and a half  more weeks at Linda's.

Amish Farmstead, Volant, Pennsylvania

As Linda was back at work, teaching pre-schoolers, I had the days to totally rest from my four very busy weeks, and the evenings to talk late into the night.  The following weekend we had more friends to meet in New Haven, Connecticut.  The fall colours were still spectacular, though we were happy to ignore them as we spent much of the time watching Michael Ball videos at Rebecca's and in our hotel room!  Well, he is  the reason we have all found each other.  None of these friendships would exist without him.

with Michael Ball, Spring 2005, photo by Susan Hammer

For this American chapter of my life, especial thanks and love to Linda, Josie, Marilyn, Stu, Fran, PatB, Susan, Shannon, Bev, Debbie, Crys, Dori, PatJ, Mary, Irina, Barbara, Ron, Rebecca and family, Donna, Kathy, Gayle  - so many more who have enriched my life with their friendship - and Sue, always.

Debbie Norris, March 2005